Between 2012 and 2020, new HIV cases in Oregon were generally declining, according to data from the Oregon Health Authority. But in recent years, the trend has headed in the opposite direction. What’s behind the change? How have attitudes shifted around HIV more recently? We dig into these details with Dean Sidelinger, health officer and state epidemiologist for OHA.
Note: The following transcript was created by a computer and edited by a volunteer.
Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. New HIV cases in Oregon went down steadily between 2012 and 2020. It was great news for what had once been a death sentence. Then the trend reversed. From 2020 to 2022, new cases in Oregon shot up by more than a third. So what’s been happening, and what might it take to bring cases down again? Dean Sidelinger joins us to answer those questions and more. He is a health officer and a state epidemiologist for the Oregon Health Authority. Welcome back to the show.
Dean Sidelinger: Thanks for having me, Dave.
Miller: I want to start with some recent history. Why do you think HIV infections went down by a third over that eight year period – 2012 to 2020. What was working?
Sidelinger: We released our first Ending HIV in Oregon strategy in 2016, and that was a document that would get us all on the same page across public health and health care to try and drive down HIV cases to zero. HIV is a preventable disease, and having that plan, and having new tools like PrEP available more widely helped to drive that number down. And we were really encouraged by those decreases.
Miller: Do you know what exactly made the difference? It’s worth saying again, those decreases started before that comprehensive statewide strategy. So what exactly was making it the biggest difference?
Sidelinger: I think having more discussions about testing, who is at risk, and making sure that people got in to get tested to know their strategy. Knowing that being treated for HIV is a form of prevention now. So we can drive people’s viral load, the detectable virus in their blood, down to zero, or undetectable, and that means they can’t transmit the virus onto others. That has been a real game changer in the HIV world, that opportunity to treat people and prevent them from passing cases on. But we need more people to know their status, and more people to get into treatment when they know they’re HIV positive.
Miller: You mentioned PrEP, that stands for pre-exposure prophylaxis, meaning a drug that you can take every day to make it much less likely that you’ll contract HIV if you’re exposed. The FDA approved the first HIV PrEP medication in 2012. What has uptake been like? How many people, who public health folks would say should be taking it, are taking it?
Sidelinger: Let me just say PrEP has been a game changer, and it is very effective when taken appropriately at preventing an individual from getting HIV. Right now, only about 27% of Oregonians who we think could benefit from PrEP are on PrEP. So we have a long way to go. We have about one-quarter of the folks who we think can benefit, getting PrEP, and so that means more people need to see the provider, get on and endhivoregon.org, to look for a provider somewhere to get PrEP so that we can close that gap and prevent more cases.
Miller: One-quarter of the people who you say could be taking this, or maybe should be taking this, are. Who is in that group?
Sidelinger: We want to get PrEP to anybody who is potentially at risk. So we see inequities now. Right now, most of our PrEP users are middle aged white men who report having sex with other men, and they live in our urban areas. So we have data that shows more women who have more than one sexual partner in a year, who’ve had a partner with HIV, who use injectable drugs, Men of Color are also underrepresented in those who are taking PrEP. Youth and young adults are underrepresented, and people in our more rural areas are underrepresented. Because it’s really anyone who’s at risk for HIV – multiple sex partners in a year, using injectable drugs and other factors like that could benefit. And we’re really only getting a subset of them right now.
Miller: So let’s turn to the news – the reason we’re having you on now – the increase in new HIV cases in 2020, 2021 and 2022. How much do you know about what’s behind that increase?
Sidelinger: While we can’t say precisely what’s behind there, we think there are a few things driving this. Oregon, like the rest of the states and the rest of the world was disrupted during that time by COVID, lockdowns and less access to health care. So we saw a huge drop in Oregon, in other states, in testing during that time. And as medical care and healthcare became more available, we did see an uptick in testing, and we think that helped contribute to some of that initial uptick in cases.
We also know that HIV doesn’t occur in a vacuum. We see risk factors for HIV that include things like people who have multiple sex partners, people who may be using drugs, whether it’s injectable drugs, which puts them directly at risk because of potential for shared needles, or just people who are looking for resources to buy more drugs, who may trade sex for drugs. And so that increase in economic instability, increase in substance use, may be contributing to part of the numbers we’re seeing. And those people are often not engaged in preventive healthcare, or engaged with other systems. So it takes more work to find the people at risk, to get them tested, and then to get them engaged in what is very effective treatment to prevent them from getting sick, and to prevent them from passing on HIV to someone else.
So multiple factors are contributing, and certainly COVID was a part of some of that initial uptick.
Miller: I’m a little bit confused by the COVID piece of this, because I can imagine it working in two opposite directions. If fewer people were going in to see medical providers and fewer people were getting tested and perhaps finding out that they had HIV, it seems like that would depress the numbers of actual new cases. Is the idea that some of those people then, without finding out their HIV positive status, they would then be more likely to unwittingly pass the virus on to other people?
Sidelinger: That’s exactly right. What we saw during the heights of the pandemic, when access to services was decreased, we in Oregon, along with other states, saw a real decrease in testing. There may have been people out there with HIV who normally would have been tested, found out their status, been put on treatment and then not passed it on to others. They may have had a delayed diagnosis because of that. And so there is an opportunity for more transmission.
It doesn’t explain the whole increase. And like I said, these larger issues, economic drivers, and the substance use epidemic that we’re seeing here in Oregon and many other states we know also contribute to risk for HIV. And so we’ve seen all of that get worse at the same time. And that’s probably also a big part of this increase we’ve seen over the last couple of years.
But I don’t want to be all doom and gloom. Preliminary numbers that are coming in this year are looking like they’re flattening out. So hopefully we’ve reached the peak, and we’ll be able to drive these numbers back down over the next couple of years and see the success we saw before the COVID pandemic.
Miller: That’s an important point. And that, I suppose, could be seen as more evidence that you could potentially explain that 2021 increase, going to 2022, as a kind of holdover from cases that were not detected earlier, a little bit of an aberration in the data.
But I am curious though, because that would show up and would be clearer if this were a nationwide phenomenon. Was there a nationwide increase in new HIV infections in 2021 and 2022?
Sidelinger: I hesitate to say all, but most of our fellow states did see some decrease in access to testing, and then an increase in cases as we came out of the pandemic. Some of that may depend a little more on COVID disruptions in the state, both from the disease itself, as well as decreased access to healthcare and other things.
We are not in the majority that is continuing to see the [decrease] the following year in 2022. And like I said, I think that is because of multiple other issues that people are hearing about in Oregon that are happening, potentially an increase in houselessness, an increase in substance use, fentanyl’s impact on the drug crisis certainly have hit the west coast and Oregon later than they have many east coast states. So I think we’re seeing some of the impacts of that, that other states may not be seeing.
I think that requires us all to get together and fight this. All of us need to know our risks and can take steps to protect ourselves by getting on PrEP. If we’re using injectable drugs, by using syringe exchange or finding clean needles. And all of us who are healthcare providers owe it to our patients to ask them about their risk and to offer testing so we can get more people tested, knowing their status, treated and preventing an ongoing infection. So we all have a role to do in driving this down. I think we can do it, and the preliminary data is showing that we’re starting to turn that corner.
Miller: This does seem though demographically like a public health challenge. If, as you’re saying, some of the people now who are most likely to be infected with new HIV cases are also less likely to have regular or stable access to care because of substance use disorder or homelessness, how do you help them get care?
Sidelinger: It’s bringing care and bringing the issue to them. It’s not just if you go to your primary care provider and have a checkup where we should be talking about what puts you at risk and have you thought about getting on PrEP? But as our social service partners, community based organizations, public health contacts individuals to try and help them with houselessness or other services, that we think about talking about and offering HIV testing in that same scenario, so that we can get people connected to that service at the same time.
It takes different partners, and all partners, to be able to think about HIV, to talk about it with clients they’re seeing and to try and get those people not just into the services they may be coming in for – whether that’s help with housing – but also get tested for HIV and get them on treatment as they get into that house, so that they can be healthier and can prevent this from spreading on to others.
Miller: My understanding is at the federal level, even though we’re talking about a recent increase in cases, Oregon is not considered a high priority area. How does that affect the resources that are available to do this work?
Sidelinger: While we are seeing our cases and our rate of new HIV cases go up, we are not by any means leading the pack among states, there are states with much higher rates. For that reason, I’m glad Oregon is not in that role. More federal resources do come to the states with a higher burden of disease, with more people with new HIV infections. And I think that’s appropriate.
I think what it means here in Oregon is that we have to continue to use our resources, continue to engage all partners in reaching out to folks to get them tested and to get them on treatment. We have many successes here in Oregon. Again, our rates aren’t the highest among states. We know that once we engage people in treatment, we have some of the highest rates of viral suppression, meaning people have undetectable levels of HIV in their blood. And we’re doing really well in that area. Where we need to improve is getting people tested, and getting people on PrEP who could benefit from that.
Miller: Speaking of PrEP again, just a few weeks ago, preliminary results of a trial from women in Sub-Saharan Africa of a twice yearly PrEP injection – as opposed to a daily oral medication – showed enough promise that the folks stopped the control subjects and said everybody should get these injections. These are preliminary still. But if they hold, what might that mean, a twice yearly injection as opposed to a daily medication that can be harder for folks to remember to take?
Sidelinger: I think it really could be a game changer. For those who have to take the medication every day, you know there are days that you forget that. And so it’s really important that people on PrEP take their medication regularly. Right now, we have options for oral medication that people take on a daily basis. There are also some injectable medications that happen in a monthly or every other month basis that are available to some, and that can certainly increase compliance or adherence with treatment. And if the preliminary results from this latest study pan out, that could be another option, where someone only has to get their medication twice a year, but could still have that same level of protection for themselves and their sexual partners, decreasing HIV in our community. So it could be a game changer and I look forward to seeing additional results.
Miller: I’m curious, just before we go, how you think about the broader cultural issues here? I grew up in the 1980s when contracting HIV was essentially a death sentence, before the drug cocktail, well before PrEP. They were known for a reason as the “plague years,” and they shaped an entire generation’s conception of risk. I don’t think that the same is true now.
If people think of HIV as a chronic condition that can be managed, does that lead to different behavior?
Sidelinger: I think certainly when we’ve looked at some surveys about how people perceive HIV, there is, especially among some younger individuals, perhaps less of a fear and anxiety about contracting HIV. And as you hit on, for some reasons that’s really great. It’s not the death sentence it once was.
But contracting HIV is not without its consequences. People who have HIV and are not on treatment can still suffer the same consequences that people did early on in the pandemic. And taking medications to control HIV and reduce the virus in the blood may have some side effects as well. So it’s not without its risks. If we can prevent HIV and eliminate that disease here in Oregon and across the United States, that would be even better. And that takes knowing your status by getting tested. And if we test positive, taking our medication so we don’t pass it on. And if we test negative, taking a medication like PrEP or other precautions to prevent getting disease in the first place is the best way to go.
But it’s great that this is not the death sentence it once was, and it’s controllable and manageable. We have other tools to prevent it as well. It’s much different than it was when this first arrived as the plague, as you call it, in the 1980s.
Miller: Dean Sidelinger, thanks very much.
Sidelinger: Thanks for having me, Dave.
Miller: Dean Sidelinger is Oregon’s health officer and state epidemiologist. He is at the Oregon Health Authority. He joined us to talk about the recent uptick in new cases of HIV in Oregon.
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